Please could someone help, i have been in constant pain since having a bilateral mastectomy 17 months ago.
I have pain in my breast under my arm and all along my arm, it is so bad sometimes just moving or lifting my arm is agony. There are different pain sensations from stabbing and burning pains, pins and needles and a dull aching pain.
My surgeon basically said all would settle down, so my doctor sent me to a neurologist who said it was damage to the nerves during surgery for the mastectomy he said there was not much he could do so he put me on Pregabalin tablets that are making feel like a zombie, i am not functioning on these tablets and my doc said to keep on them for a while to see if i get used to them.
Has anyone else had any symptoms like this, if so i would love to hear from you.
Sorry to go on so much but i am having a really bad day today, i feel like i have been thrown in a corner by all the doctors, and told just to get on with it.
Thank you
Jo xxx
Hi Jo
I had WLE 20 mths ago and for the past 5 months have had similar to you. The pain/discomfort is under my arm, along the side of my body and along the forearm to the elbow. It varies from pain to a feeling of mild discomfort and isnt the same each day.Today has been pretty bad and the pain seems to have spread just into the back area.I even occasionally get a sharp stinging pain just where the lymph woulnd is. A customer at work - who had masectomy 2 years ago - is exactly the same and she had an appt to see onc today so am waiting to see what he says to her. You are right, it really gets me down as I thought all this would have started to wear off by now. Would love to hear from otheres who have this.
Love Laine
Than you so much for replying laine.
I am sorry to hear you are going through the same pain, mine to is different daily.
I thought i was going mad as i don’t no anyone who has had this trouble, I can’t seem to be able to get any help from any of my doctors, they seem to be brushing me off, but just like the pain i am not going away, please could you let me no what your customer’s onc has said to her as i just seem to be going in circles.
Than you
Love jo xxx
Hi Jo
The lady has just been in to see me. The results of her mammo were clear and they also gave her a physical examination - all fine, come back in a year. Apparently these pains are nothing to worry about, they are the damaged nerves which can take a long long time to heal and cause a lot of pain and discomfort in doing so. Still dont know why not everyone suffers - but she and I had the same surgeon who is a bit gung-ho and a “if in doubt whip it out” kind…
Feel reassured but its not easy when you have no-one to compare with - I was convinced it was something sinister but couldnt quite work out what or where as it was so changeable and varied. I must admit I havnt kept up the exercises that I learnt in hospital, maybe they would help but you dont really know whether you are doing more damage as they were to prevent lymphodema and not for nerve damage as far as I am aware. What really helps are those cold packs placed on my arm and I suppose ice would have the same effect.
Anyway, at least its deemed to be “normal” and thats all I wish for nowadays!
Love Laine
I didn’t have a mastectomy but had WLE with node sampling as opposed to clearance … I was advised prior to surgery that node clearnace (if necessary) required the surgeon to divide the nerve that fed from the upper body to the upper arm (I think I remember it correctly but please correct if I am wrong) and this can result in pain/numbness in the upper arm which will be permanent to a degree with some surface feeling returning in time.
After my surgery I was not given any physio exercises at all (it’s not always best to go private!) and as a result of this I developed quite nasty chording … my BCN (NHS) referred me for physio in prep for rads planning and this made an amazing difference… not only did it get my arm much more mobile it helped with the stiffness down the side of my body and the physio managed to get rid of all but a tiny bit of the chording.
As I said I had node sampling as opposed to clearance but still have a weird stingy numb pain in my upper arm, my surgeon thinks the nerves have been tweaked during surgery. This did get a bit better but since going through rads it has gone back a bit … the BCN says it may be a combination of the actual rads (I’m being blasted in the armpit), the position I needed to be in for the rads (arms above the head & hold still please!) and the nerve endings healing themselves. My pain is not severe and does not impede on my every day life - I do tend to still try to stretch for something with the right arm only for it to twinge and make me switch to using my left one instead.
I hope you both manage to get your pain resolved.
hi there I have the same problem have been booked in for an MRI just as a precaution great !!! mind in overdrive but onc seems to think poss nerve damage after mast then going to neurologist… its easy for them to say not to worry but after bc every little ache sets you off again … good to hear that it is quite common place so I am very positive it wil be the nerve problem and not any thing more sinister only had mast in Oct 07 and recon Jan 08
mind you we are all tough birds on here and seem to cope with anything LOL 
love to you all Maz
good luck with the scan mazaro. I hope you manage to get something that helps the pain.
i to have moderate to severe pain (at the moment severe), I a 3 years down
the line from my lumpectomy and had a mam last jan, a follow up appointment this feb i explained that i was experiencing a lot of pain, consultant sent me for an ultrasound and everything came back clear no
sign of an “nastys”.I have suffered from breast lymphodeoma and have
been having treatment for the last two years so consultant puts the pain
down to that. I s there anyone that can advise me on how to relieve the
pain, I have even started putting a kotex pad in my bra as the pain appears
to be mostly in the lower part of the breast.
regards gillya
Hi ladies thaks for replying.
Gillya have you tried a hot water bottle, won’t take the pain away but it is sort of comforting.
Maz i hope your scan is good news, you won’t stop worrying untill you get your results.
I don’t think anyone can no what it is like to worry over these things unless they have had cancer.
Lilacblushes when i wen’t to the neurologist he said it was the node clearance that damaged the nerves not the mastectomy,
I have that weired stingy numb feeling over my breast ( or what used to be a breast) and in the top of my back as well.
Laine thaks for letting me no about your customer, i am so glad it was just nerve damage.
If any of you find a magic potion for these pains please let me no.
Take care all
Love jo xxx